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Nearing 100 days POST TRANSPLANT

Today we are just 3 days away from that 100 day mark of post transplant….Well guess what in all honesty and truths, that really don’t seem to make a difference for Nathan, as he had a Haplo bone marrow transplant and things tend to work very differently for these cases; BUT we are excited anyways to be here at this point wanting to celebrate and make it MORE, we will do that but cautiously. The 100 days post transplant is a very special day for so many because that is the estimated time it take for the body to build an immune system and those that follow that schedule can start lifting some of those hardship restrictions and with little baby steps begin to enter back into the real world, as long as everything is going to plan to begin with.

Nathan’s world, we are just beginning to bounce back from the GvHD(Graft vs. Host Disease) and recover from that wicked nasty horrid virus BK w/HC, I do have to say with these last 6 1/2 yrs under our belts of Nathan fighting osteosarcoma the surgeries, chemos, and everything involved, this BK w/HC truly beat my boy down; this virus pushed him to the edge, challenged every bit of this kiddos being, strength, both mentally and physically and damn near pushed him over the edge of things. This experience was one Nathan could have definitely done without, but as he endured all that, the pain, blood, the lack of or should I say NO SLEEP, and oh did I mention the pain? That was severe, pain like no one should ever have to endure ever let alone a kid…imagine passing kidney stones every day all day for a month(yep no fun) and no sleeping to boot because of the whole situation. Yes you read correctly round the clock no end to it 24-7 pain. Medications only to maybe at ease to life but not really because with those meds came side effects which added more pain and more problems, oh yes and then of course more meds to treat those problems and effects; Nathan had to stick it out as there is no treatment for the BK w/HC virus in this state but to treat the symptoms and make sure he don’t bleed out (HC stands for: hemorrhagic cystitis) by monitoring his platelet count carefully, which his Drs did an amazing job with.

…So basically let me sum up; this last month has been an absolute miserable horrid experience for us all. As his mom, of course I was right there for him through this whole process, round the clock helping, comforting and crying right along with him. I cannot say enough how heart wrenching it is to have to stand by and watch your child suffer in any means especially in pain and fear. Calling back and forth with his Dr.s and they too having to sadly express there just was no treatment they could provide just treat the symptoms. There were many opportunities to admit into the hospital with this if it was too much to bear and endure but for Nathan the meds they would administer would cause more issues on top of these, he cannot have many of the meds that most can to relieve the pain and discomforts things like this bring, so he can only have the basics of that world and so with all that into consideration he chose to stay home where he at least had the comforts of home around him, because admitting would not change the situation nor speed up the process to getting better, honestly thinking about it it may have even challenged him more.

So it’s now the night before his 100 day post transplant day, I had to take care of appts. and all, so I got side tracked on the post, today we found out Nathan’s immune test, they test how strong his system is, well, yup they’re very low, what was kinda expected for him at this point still with the Haplo transplant.

I’m gonna hop off this post so i can get it up especially beings it’s a few days old now..

Thank you ALL for all the prayers and great words of encouragement for/to Nathan…God Bless